Digital in dementia: Better wellbeing through tech

15 Oct 2019


Good Things Foundation and NHS Digital are working in partnership with organisations around the country to build Widening Digital Participation pathfinders - pilot projects to bring digital health inclusion to those people who are most excluded. 

In this blog post, Rachel Benn, Digital Inclusion Coordinator for Leeds Libraries’ 100% Digital Leeds programme shares their progress so far on their Dementia Pathfinder. 

There are over 8,000 people in Leeds living with dementia - many of whom already use a well-established peer support service in the city, with almost 50 memory/dementia cafes and carer support groups across Leeds. However Leeds Libraries believe that even more can be done - the Dementia Pathfinder is a targeted digital inclusion programme for people with dementia, their families and their carers, to explore how digital innovation can support them to manage their condition and so improve their health, wellbeing and independence.  

Leeds Libraries are leading the city’s 100% Digital Leeds campaign, improving outcomes for everyone through digital inclusion. 

The focus for this Pathfinder has been to harness our library offer and, working with leaders and members of support groups and organisations, support digital engagement and inclusion in those communal spaces where regular activity takes place. This allows us to bring the skills, knowledge and digital resources of the library service to trial digital technology within familiar and informal settings... something that we’ve found is hugely important to people with dementia. 

Phase 1 – Research and design

We began the Pathfinder with two workshops: one for stakeholders who work with people with dementia and another for people who have been diagnosed with dementia and their carers. 

These workshops helped agree a clear set of recommendations at the outset:

  • Deliver Digital Champion training to the Peer Support workers and Memory Support teams across Leeds, equipping them with digital resources to engage and embed digital in their regular sessions and cafes.
  • Make Carers a priority, finding the ‘hook’ to digital in carer support groups, enabling carers to become digital champions. They ultimately have the power to make the change.
  • Create a digital space for communication, setting up an informal Facebook group for Dementia Carers, for social interaction, sharing life hacks and providing a place for emotional support outside of the monthly meet-up groups. 
  • Trial Alexa in the home to see the benefits of the Internet of Things in supporting Carers wellbeing and everyday life. 

Following the workshops, we tested our recommendations by partnering with Carers Leeds to deliver a series of focus group sessions with their Dementia Carers.  We wanted to know what digital technology they currently use (if any), what their current barriers to digital inclusion are and what their aspirations were for taking part in the pathfinder. 

Current barriers:

  • Frightened of the pop ups in apps asking for financial details
  • Too many apps to choose from, not knowing which are recommended
  • Not knowing how to use digital technology
  • Not knowing how to download apps
  • Too many icons and functions, these are not always accessible visually.
  • No device, Wi-Fi or access
  • Lose patience quickly 
  • Forget login and passwords
  • Tired of repeating the same instructions to my spouse I care for
  • No digital skills 
  •  
  • It’s complicated, there’s no manual!

Carers’ ideal outcomes by introducing digital technology 

  • As carers we would hopefully feel less alone and when we’re frustrated or tired we could chat to other carers who may feel the same
  • We can have easier conversations with the people we care for
  • We can have meaningful, memorable activities to share and do with the people we care for
  • We can feel more connected
  • We can have resources to help us encourage reminiscence and share the good memories and photographs

We felt these findings linked really well with our recommendations and we decided to use innovative and non-traditional approaches to technology to engage this target group.  

Phase 2 – Test and learn

We’ve now set up a Facebook group for the Carers and we’re delivering Digital Champion training for staff and volunteers across many of the dementia cafes and for staff working with people with Dementia in Leeds.  We currently have 35 Digital Champions and more training scheduled over the coming weeks. This training has already seen an impact especially with the Peer Support Coordinators delivering sessions across the city.  Where access was a barrier we introduced our established Tablet Lending Scheme to lend 4G-enabled iPads to these organisations. This has provided a real positive enhancement- iPads are now being used to access old photos of Leeds, play brain teaser games and listen to music for reminiscence activities. 

Our Digital Champions at Cross Gates and District Good Neighbours have also introduced iPads into their Dementia café.  One particular gentleman with Dementia, Bill, used to be in the Royal Navy.  He often struggles with communication and frequently becomes agitated.  One of the Digital Champions found a YouTube video of Royal Navy songs coupled with old photos of the Royal Navy.  Bill instantly started tapping his feet, clicking his fingers and smiling and he came ‘alive’. It was emotional and positive experience which resulted in him sharing stories of his days “on the ships”, smiling and laughing.  It was a lovely shared experience with the rest of the group and a great example of the positive impact of digital technology in these sessions. 

We’re hearing similar positive feedback from our Digital Champions across the Dementia cafes in Leeds who are using Google Street View to take people back to the places they grew up and went to school.  This is sparking wonderful memories and instigating positive conversations.  

Digital games have also been really effective for social engagement.  One of our Complex Needs Centres have regular humorous ‘handbags at dawn’ moments with many battling it out for who will use the jigsaws first.  They’ve now downloaded jigsaw apps on iPads which have been incredibly popular as a social activity, calming the arguments down. But the best benefit? As they say “No pieces can go missing!” 

Many of the digital resources they’re using are reminiscence tools. This led us to think about the possible benefits of Virtual Reality in these sessions, trialling a dementia friendly VR film called The Wayback. This takes people back to the Queen’s Coronation street parties in an immersive experience. This has been really successful and has been a great ‘hook’ for many that were less engaged in the technology in the first instance. 

Finally we have recently purchased several Amazon Echo Shows to trial with Dementia Carers to see what practical benefits these could have on their lifestyles, independence and their health and wellbeing.

Some benefits so far include:

  • Logging medication reminders
  • Video calling friends and family
  • Creating opportunities for social interactions
  • Mood boosting 
  • Practical life hacks 

One carer said “I use it to calm me down when I get frustrated and Alexa tells me a joke, these make me chuckle and I instantly feel better.”

We’re also partnering with Invisible Flock to trial a digital art and creative element within the Pathfinder which we’re really excited about!

The Dementia Pathfinder is expanding Leeds Libraries' offer for people with dementia, their families, friends and carers. We’re thoroughly enjoying seeing the positive impact the Pathfinder is having and we’re really looking forward to seeing even more impact over the coming months. If you would like to find out more, get in touch on Rachel.benn@leeds.gov.uk 


You can read more about digital health interventions for older people in the new report, released this week.